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Aim: To evaluate the effects of a physical activity programme on sedentary behaviour and physical activity in ambulant individuals with Rett syndrome (RTT). Method: In this multicentre randomized waitlist‐controlled trial, we recruited 43 ambulatory individuals with RTT in Australia and Denmark. Adequate baseline data were obtained from 38 participants (mean age 20 years, range 6–41, SD 10 years 6 months, one male). All completed the trial. Participants received 12 weeks of usual care (n = 19) or a goal‐based, telehealth‐supported programme in which activities occurred in their familiar environments (n = 19). Sedentary time and daily steps were assessed at baseline, post‐test, and 12‐week follow‐up. The data analyst was blinded to group allocation. Results: Sedentary time decreased in the intervention group by 2.7% (95% confidence interval [CI] −6.0 to 0.6) and increased in the control group by 1.3% (95% CI −4.8 to 7.4). Intervention and control groups increased the number of their steps per day by 264.7 (95% CI −72.2 to 601.5) and 104.8 (95% CI −178.1 to 387.7) respectively. No significant differences were found on any outcomes at post‐test. There were three minor adverse events. Interpretation: A goal‐based telehealth intervention seemed to produce small improvements in physical activity for individuals with RTT. Families require more support to increase these individuals' extremely low physical activity levels. What this paper adds: A telehealth‐supported intervention may produce small changes in physical activity in Rett syndrome (RTT).Increasing physical activity in individuals with RTT is challenging for caregivers.Families require substantial out‐of‐home support to increase their children's activity levels. [ABSTRACT FROM AUTHOR]

Introduction: Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT., Methods and Analysis: This is a multicentre study, conducted in Australia, Denmark and Israel. It is a randomised waitlist-controlled trial comparing an intervention to support physical activity with usual care. Participants are children and adults with RTT, recruited from the Australian Rett Syndrome Database, the Danish Center for Rett Syndrome and the Rett Syndrome Association of Israel. The intervention duration is 12 weeks, including fortnightly telephone contact to plan, monitor and develop individual activity programmes. Outcomes are measured at baseline, at 13 weeks and then at 25 weeks. The primary outcomes are sedentary behaviour assessed with an activPAL accelerometer and the number of daily steps measured with a StepWatch Activity Monitor. Secondary outcomes include sleep, behaviour and quality of life. Caregiver experiences will be assessed immediately after the intervention using a satisfaction questionnaire. Group differences for each outcome will be evaluated with analysis of covariance, adjusting for baseline values on an intention-to-treat basis., Ethics and Dissemination: Ethics approval has been obtained in Western Australia from the Child and Adolescent Health Services (RGS3371), in Denmark from the Capital Region Ethics Committee (H-19040514) and in Israel from the Ariel University Institutional Review Board (AU-HEA-ML-20190331). Manuscripts on the development of the intervention from pilot work and the results of the intervention will be submitted to peer-reviewed journals. Results will be presented at conferences and consumer forums. We will develop an online resource documenting the physical activity programme and available supporting evidence., Trial Registration Number: NCT04167059; Pre-results., Competing Interests: Competing interests: JD is employed at Telethon Kids Institute where she is program head of Child Disability. The protocol for this study was developed for this grant received from Rettsyndrome.org. The authors do not have competing interests to declare in relation to this study., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)